Baby With Rare Disease Can't Be Touched by Mother

2-month-old Kiira Kinkle's skin blisters at the touch
By Shelley Hazen,  Newser Staff
Posted Dec 23, 2014 8:07 AM CST
Baby With Rare Disease Can't Be Touched by Mother
File photo   (AP Photo/Martha Irvine)

Two-month-old Kiira Kinkle's little fingers and toes are bandaged every day. Her mother can't touch her skin. And every night, her sisters pray her "owies" will go away. Kiira has the severest form of a rare disease called recessive dystrophic epidermolysis bullosa (RDEB), which makes her skin so fragile it breaks or blisters at the slightest touch, KCRA reports. "This is the worst disease you've never heard of," her mother, Kirsti, tells the station. Kiira was diagnosed just after she was born in October, after her parents saw blood on her skin, adds SF Gate. Only 200 children a year are born with epidermolysis bullosa (EB), but only one in a million have the recessive version. It keeps Kiira's body from making collagen, needed to hold skin together.

Right now, Kirsti and husband Jason can only treat Kiira's disease, talk to a bevy of medical experts, and sign her up for a clinical trial, adds SF Gate. Because there's no cure, children with RDEB don't live long. For now, Kiira is healthy and rarely gets new blisters; "she can wear clothes and a diaper, and she is eating and gaining weight,” Kirsti writes in a blog dedicated to her daughter. But "I can't hold her hand because it's constantly bandaged," she tells KCRA. "I would never wish this on anybody, knowing she's going to live a life of pain." The Kinkles have raised $50,000 to pay for Kiira's care; treatment runs between $10,000 and $20,000 a year. (There is some hope for some children with EB.)

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